Parents who froze girl in time defend their actions

Opinion was divided yesterday about the case of Ashley X, the nine-year- old girl whom doctors have determined will never grow up. The severely disabled child has had her womb and breasts removed and hormone treatment to halt puberty and stunt her growth, freezing her development so that her parents can continue to lift and care for her at home.

Called "Pillow Angel" by her parents, the girl, who suffers from static encephalopathy, cannot walk, talk or hold her head up. She is fed through a tube and lies wherever she is put, usually on a pillow.

Her parents, from Seattle, who describe themselves as college-educated professionals, gave their reasons for seeking the treatment for their daughter in a 4,000-word blog launched on New Year's Day.

Only those in a similar situation were qualified to comment, they said. "Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their care givers.

"Ashley was dealt a challenging life and the least that we could do as her loving parents and caregivers is to be diligent about maximising her quality of life.

"A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver."

The parents also describe how their daughter is faring after the medical procedures in other blog entries. "Ashley is doing well ... [she is] healthy, happy, and lovingly cared for."

Medical experts said they could not say for certain whether the case was unprecedented, but that nothing similar had been reported in mainstream journals before.

"It's simply the first reported case any of us know about," Jeffrey Brosco, a University of Miami paediatrician and co-author of an editorial criticising the treatment, told the Los Angeles Times.

"I think most people, when they hear of this, would say this is just plain wrong. But it is a complicated story, and when you get into this issue, you can understand the difficulties."

Arthur Caplan, a medical ethicist at the University of Pennsylvania, said the "do no harm" rule governing physicians is powerful and stopping growth is, "not the ethical way to head".

In the UK, Richard Parnell, of Scope, an organisation which focuses on care for people with cerebral palsy, said many British parents of children with conditions similar to Ashley's would be "appalled" by her treatment.

"We hope any such request for this kind of treatment would go to a court because it is an abuse of the child's human rights and this is why everyone is so outraged," he said.

Professor Raanan Gillon, a leading ethicist at Imperial College London, said: "My immediate response was shock, horror and disgust. How could a child be mutilated in this way?

"But on reflecting, it seemed to me there were some reasons in favour. She could be looked after much better by her parents... in a much more appropriate way as a child."

Some parents of disabled children attacked what has been described as " Ashley's treatment" for creating a 21st century Frankenstein and for maiming a child for the sake of convenience.

But scores of supportive comments on the parents' website revealed how their decision had touched a nerve. "I worked with the severely disabled for 30 years and know the problem of a 190lb, 6ft tall man with the mind of an eight-month-old," reads one. "To bath, change and just move him was a nightmare.

"If they could be kept small then life for them would be easier and happier, they would be taken out more and kept home longer and live much more normal lives."

David Fleming, a physician who is director of the Centre for Health Ethics at the University of Missouri, said: "Only history will know and only time will be able to witness whether they [the parents] made the right decision. It seems likely they were acting in the best interest of the child. "

What is static encephalopathy?

Ashley has been diagnosed with static encephalopathy of unknown aetiology. She had a normal birth, but failed to develop, mentally and physically, for reasons doctors could not ascertain. "Over the years, neurologists, geneticists and other specialists conducted every known traditional and experimental test but still could not determine a cause," the parents say on their website. The diagnosis means that her brain has been damaged and the addition of the term "static" means that her condition will not improve. She will remain for the rest of her life with the mind of a baby.

The symptoms of static encephalopathy depend on which part of the brain is damaged. There is no cure and treatment is symptomatic, to ensure the child is kept comfortable and does not suffer.

Ashley's parents chose, in consultation with her doctors, a treatment known as growth attenuation. In 2004, doctors in Seattle, where the family lives, carried out a hysterectomy and surgery to remove her breast buds and started her on the hormone oestrogen to halt puberty.

The aim was to restrict her height to its present 4ft 5in - compared with the 5ft 6in expected without treatment - and to limit her weight to about five-and-a-half stones, instead of the nine stones expected. Her parents say this is not for their convenience but it will mean Ashley can be moved more easily, taken on trips and included in more family events "instead of lying down in bed staring at TV (or the ceiling) all day". The treatment was discussed in the US journal Archives of Paediatrics last October, provoking criticism from some doctors. The parents responded by launching their blog on 1 January.

it sounds like it would indeed be difficult with the parents, but I think they made the right decision and I'm glad they did.
If I'd have to choose between living a more comfortable life but having certain elements of my body taken away (which I don't think someone with the mind of a baby really needs) or a way less comfortable one which would also mean my body would be less of a hinder to my parents, then I'd definetely choose for the first.

So what they're saying is, they had a child who was born with abnormalities. Her life is severly limited, but that's how it is. She exists. Those parents chose to bring their daughter up and give her the best quality of care they can do. Then they realised the sheer amount of commitment through her teenage years and onward, and decided because they are the "guardians" they can mutilate her existence(when itdoesnt need to be) by taking away natural body development that in some fashion will stimulate and adjust her natural perception and interaction in life. Theyve decided that at some level it's alright to adjust a life, souly based on the suffering in comparison that will walk with her throughout her life.

GET HELP FROM THE GOVERNMENT. Get help from groups. Get help if you can't give her what you need to give her. Don't fucking change her.. ... well she'll always be her. But you've stolen something from her in the grace that the comrpomise will give something more. Nasty fucking call, that's sick and an abuse of the medical practice and advancement. That is not a reason to take something so vital like sexual and growth development away. Even if it gives something so much better. It's wrong, and it only spawns the fucking idea that you can multiate your child if they are handicapped to give A "better quality of life" in the future. Fuck you. Obviously you can't deal with the child and growing adult. And im not being ignorant, it's an incredible challenge every moment. But that's the commitment you gave be KEEPING the child. IF you CANT keep the child in a safe and respectable state, YOU HAVE TO SEEK HELP. Not fucking finding idiots to justify reasons to cut her fucking body open and remove the very fabric of what makes her a female, let alone what makes her existence here what it is.

Whatever... I seriously hope she has the absolute best life now. Disgusting abuse of power. Fucking disgusting.. and it's done with the best of intentions.. thats the worst part. Now look whose watching and taking note and using these people as examples.. ffs whatever

ps this bugs me. Froze is not the right term. They removed aspects of her life, her existence away from her. Frozen implies the potential ability at some point to thaw and have once again. This is not a Stall. This is a completely indirect way of harnessing and manipulating the foundation of what we will do to a human being. It's "creation" through removal. It's .. disgusting. It's not a cancer mutation that grows out of proportion that we don't understand and have to remove. It's something that you just dont want to have to deal with because it will change everything as she develops. So youre removing her ability to thrive as she would naturally. Attack her inital state all you want, but who she is now, is who she is. Just because they look after her and care for her doesnt MEAN THEY CAN TREAT HER LIKE THAT... why am i so angry about this.. im getting a tea.

To be honest, I would have sought legal advice on the possibility of removing the feeding tube à la Terri Schiavo so I cant really say this was unreasonable.

Click to expand...

That's completely different. That's where she is supported constantly by a series of machines that hault her inevitable death. Unless you're considering that the human factor here is the same as those machines. I suppose that's a matter of perspective.. But there's a fine difference between letting someone die naturally, to adjusting how they live by removing a part of who they are. My wording is bad because I can see someone comparing that to a tumor or some other ailment that encorporates the removal of a body aspect. In this case, atleast to me, this girl would grow naturally, would develop naturally, and would precieve life in her own way and grow in her own way. Exceptionally limited yes, and it could only be that she sees from a different height, if she sees at all. But the changes themselves, adjust all her other senses. The changes in her body encourage her own development. She's ...
been denied that for a compromised comfort that inevitably is someone elses failing, not hers. But.. i can see how people would give up an arm and a leg for certain things. But the difference is, she has no say. She's at the mercy of her parents, sane, concious, human beings. That is not how I would treat another human being. It's not restoring anything at all. It's merely keeping her in a state and denying her a potentially promsing change. Or even.. a horrible change at that. But that would be her nature, her life. Things should have been emphasised to expand on the research into her situation. To finding ways of connecting with her on some stimulating way. Not.. worrying about how difficult it truly is going to get and canceling out those problems by muting her growth and denying her natural body development.

how sad that the parents were in this position of having to make this decision ..
I am so appreciative of the fact that I never had to experience this

if making those changes to Ashley means both she and her parents have a better quality of life then I understand why they made this decision
the alternative would be to be put Ashley in a home where she would not have the parental nurturing and the family would be split.

I see loving parents doing everything they can to be able to keep Ashley with them and look after her as a family unit
jmo

Fair enough. Perhaps then, the doctors and, (as Issaccs mentioned) legal advisors should be questioned as far as their interpretation of their own moral and ethical code that they are supposed to maintain through difficult situations like this. They're supposed to guide them when things feel lost, and help them see other possibilities. This getting past a legally practising medical centre proves how weak our respect or even consensus is for how we respect eachother, our bodies, our minds ect. It's a kicker because it involves children whom are disabled. One of the more heart wrenching points in who we are. Bending is .. Yeah. It'd be intersting to hear the doctors points of view on how this doesn't go against their main charter of doing no harm. If they set a standard for acceptable losses for a progressive future, you have a very serious blurred line that needs to be re-examed so it can be refined to a point that it can't be manipulated or mis-used to justify procedures and interferances in other peoples lives. You've got loads of issues in your post. When does family issues over-ride a general respect for life. How far can long term compassion go to justify extreme alteration in natural development in the moment. What other disabilities can other people use to fit this template of accepted practice. How can we evolve that to better ourselves. How much do we understand their current state to alter them now..
Yeah it's wrong. Does that mean that if a child like that is passed onto the state that the state has a selected number of options to "alter" that said disabled childs current state to give them something that is considered a "better quality of life". That's a bit extreme, but it's.. relevant in an obscure fashion in my opinon.
it also says, realistically, in this persons life span we have no hope of progressing their quality of life. Which is a sad fact, but that being re-affirmed in this manner by these methods is.. Well.. Here's hoping for a future that there are more progressive ways of helping ourselves that don't include this form of mutilation.

Fair enough. Perhaps then, the doctors and, (as Issaccs mentioned) legal advisors should be questioned as far as their interpretation of their own moral and ethical code that they are supposed to maintain through difficult situations like this. They're supposed to guide them when things feel lost, and help them see other possibilities. This getting past a legally practising medical centre proves how weak our respect or even consensus is for how we respect eachother, our bodies, our minds ect. It's a kicker because it involves children whom are disabled. One of the more heart wrenching points in who we are. Bending is .. Yeah. It'd be intersting to hear the doctors points of view on how this doesn't go against their main charter of doing no harm. If they set a standard for acceptable losses for a progressive future, you have a very serious blurred line that needs to be re-examed so it can be refined to a point that it can't be manipulated or mis-used to justify procedures and interferances in other peoples lives. You've got loads of issues in your post. When does family issues over-ride a general respect for life. How far can long term compassion go to justify extreme alteration in natural development in the moment. What other disabilities can other people use to fit this template of accepted practice. How can we evolve that to better ourselves. How much do we understand their current state to alter them now..
Yeah it's wrong. Does that mean that if a child like that is passed onto the state that the state has a selected number of options to "alter" that said disabled childs current state to give them something that is considered a "better quality of life". That's a bit extreme, but it's.. relevant in an obscure fashion in my opinon.
it also says, realistically, in this persons life span we have no hope of progressing their quality of life. Which is a sad fact, but that being re-affirmed in this manner by these methods is.. Well.. Here's hoping for a future that there are more progressive ways of helping ourselves that don't include this form of mutilation.

Yeah that's the problem. The definition of life, conciousness ect vs a "vegatative" state. To remove something that could at some later date be re-stimulated to work in that persons life is ... theres alot to take into consideration.

She's not in a vegetative state is she though. And even in that, hypothetically the more we understand about the human body, the more possibile it is to find a way to that being in that body. Unless a depiction of a vegetative state is absolutely no abilty to ever have concious thought, not too sure how we could ever make such a bold claim. It's messy.. but even in that, what's a percieved better quality of life, and who sets the standard for that in comparison to the worth of the "Pieces" they are cutting out. Or more, aspects they are removing. It's dodgy cause value starts to creep in in comparison to the current standard of living, vs what they can have if they give up X aspect. It's even more dodgy when someone is making that choice for someone else who cannot. Essentially removing that person from any potential advancment in the future for brain research and stimulation. Even if they do somehow make an advancement that could potentially rectify her brain, the damage to her entire sexual nature is done. Unless by some parrellel they find a way to re-introduce those removed aspects from her, it's a done deal and she'll be this way forever. Instead of having atleast one aspect of her body that would continue to naturally develop, and in some minute aspect even stimulate something new in her brain. ... im obviously reaching. ..I think imactually trying to convince myself that we just suck and this is the best we can do. OR perhaps, seeing how desperate these parents are.. and how little the medical community did to help them get out of this particular desperation and encourage .. something better.

I guess I can understand why the parents would think they were doing what was best... but to me, the whole thing just seems wrong. I can't see any justification for intentionally disfiguring a child that had no say in the matter. It would be one thing if she was absolutely brain dead - I'm actually of the belief that a person with zero cognitive function (i.e. a "vegetable", in non-PC terminology) should not be kept alive on life support. However, anyone with any amount of mental ability and self awareness should be entitled to live as full a life as they are capable of. I don't believe parents should have the right to MUTILATE their child (yes, that's right, I'm calling it mutilation) for the sake of convenience. I don't care if the girl doesn't know what they did to her. I don't care if she'll never be able to take care of herself. I don't care how difficult it is to care for a full grown adult with severe mental disabilities. If it's too difficult for them to handle, they should have given the child up for adoption - or better yet, not had kids in the first place. What kind of precedent are we setting if we tell people it's okay to mutilate their children as long as it makes raising them "more convenient"?